‘I have to remain optimistic’

Rachel Jones

LETTER OF THE DAY: HGV battle is won. Pity PCC didn’t tell us

Friendly, outgoing Jackie Britton has always been one for a good chat.

The problem these days is that she sometimes loses her train of thought and becomes a little forgetful when tiredness takes over.

That doesn’t stop Jackie, however, from telling as many people as possible that she has hepatitis C.

Now the 53-year-old is planning a one-woman awareness-raising drive from her craft products stall at Portchester Gala on Saturday.

As well as displaying leaflets and news stories, she’ll be warning visitors that she contracted the potentially deadly virus through a blood transfusion in the early ’80s – and that many more people could be at risk.

Despite often feeling nauseous and exhausted as the virus continues to attack her liver, Jackie is determined not to sit back and take it easy.

‘I was always such an active person before this and I love meeting and talking to people,’ says the Portchester grandmother.

‘I just feel like I need to do something, something positive has to come out of this. If I can give someone a fighting chance, I will.’

Jackie’s transfusion was in 1983 after her first daughter Annaliese was born. She suffered a massive bleed at home, was rushed to hospital and received the infected blood.

But it wasn’t until 30 years later that she was finally diagnosed with hepatitis C after becoming increasingly exhausted and nauseous.

By that time the virus had caused damage to her liver and now Jackie is living with cirrhosis – scarring of the liver that cannot be reversed.

Jackie tells her story from her living room and apologises if she forgets what she’s saying and her mind wanders – it sometimes happens as a result of the fatigue.

Despite this, she’s excited about the gala where she’ll be selling the products she used as a crafts teacher.

Unable to teach any more, Jackie’s hoping to raise some funds for hospital visits to London – and of course get her message out.

Public awareness of hepatitis C rose after 1991 when the government began screening blood products for the virus and many realised they might be at risk.

Then in 2004 Anita Roddick, founder of The Body Shop, was diagnosed following a blood transfusion decades earlier and campaigned with charity the Hepatitis C Trust.

But Jackie believes the message still hasn’t got through.

‘I think it’s gone from the public consciousness. I’ve spoken to people recently who had transfusions before 1991 and they’ve never been tested. ‘

Her concerns are echoed by the Hepatitis C Trust.

‘It’s one of those illnesses that tends to get brushed aside and there is a stigma, partly because it is an infectious disease and partly because of the association with drug use. People think it has nothing to so with them,’ says Samantha May, head of patient support at the trust.

Drug users who inject are a high risk group as it is a blood-borne disease, but it only takes one incident, perhaps decades ago, for someone to be at risk.

Anyone who had medical procedures before 1991, had a tattoo or visited the dentist decades ago when health and safety procedures were less stringent or has had medical treatment in a different country should also ask for a test.

It is estimated that around 215,000 people in the UK have chronic hepatitis C but only about 100,000 have been diagnosed.

But there is new hope on the horizon with a drug that has been licensed for use in this country and is awaiting approval from NICE, which recommends which treatments should be widely available on the NHS.

Current drugs can cure hepatitis C but they don’t work for everyone and can have serious side effects.

The new medication, called sofosbuvir, is thought to be easier to tolerate and gives more people a chance of finding a cure.

Having already tried two unsuccessful programmes of treatment, Jackie remains optimistic about the drug which she hopes will be available towards the end of the year.

‘It’s a case of having to be,’ says the mum-of-two. ‘This could give me a longer life and I won’t have this hanging over me. If it gives me a 10 per cent chance of a cure, I’ll take it.’

It actually gives her a 50 per cent chance. The treatment wouldn’t rectify the existing damage to her liver but would vastly improve her quality of life.

Currently the damage isn’t bad enough for Jackie to be on a transplant list, but she has an increased chance of liver cancer and a simple sore throat could tip the balance and land her in hospital.

Early diagnosis is the key to success but this can be difficult because signs – including flu-like symptoms – can be vague and attributed to other things.

Jackie had several unrelated operations in the ’90s and thought that hepatitis C would have been picked up.

But she and the trust warn others that this isn’t the case as it is a specific blood test. The Hepatitis C Trust hopes the new drug will raise awareness and encourage more people to seek testing.

And the organisation is thrilled with Jackie’s plan.

Now she’s planning her stall with the help of her parents and husband Derek and hoping she’ll have an impact.

‘I’m just one woman and can’t do much, but if one person listens it will be worth it,’ she says.

Sofosbuvir could change many lives. Although there are already drugs that can cure hep C, this medication is thought to increase the chance of success for many patients.

But early diagnosis is still key as people who have developed cirrhosis have a reduced chance of a cure.

The Hepatitis C Trust would like to see more awareness among the medical profession, although it recognises symptoms may not surface for many years.

But the charity knows of cases where diagnosed patients have been given wrong information about their condition.

And the trust also heard how one woman’s hep C came up in blood tests and no-one thought to tell her. ‘That’s how much ignorance there still is,’ says Samantha May.